Except to me. Today is the day that my life, my children’s and my husband’s life changed forever. Today is the anniversary of the day I was told I had advanced breast cancer. The day my lump was confirmed as an invasive ductal carcinoma.
They knew it was bad, but not even the medical professionals knew how bad until all the tests were back. It was about two weeks later that I knew it was triple negative. A few days before this I had read about triple negative and what that meant for the future of patients with this rare form of breast cancer. So when they obtusely revealed that the tumour was oestrogen, progesterone and HER2 negative, I was able to say to my oncologist “so I’m triple negative then?”. He knew, by my knowledge and question that I knew what that meant. Trouble is not many other people do.
About six months after the 15th May 2018 I was confirmed as having secondary cancers in my contralateral (opposite) axilla (armpit). It had only been days since I finished my radiotherapy for my primary tumour. So since 15th May my treatment has just blurred into one long endurance test that keeps on coming. It is relentless.
Right at diagnosis I remember my breast surgeon telling me I’d have 18 weeks neo adjuvant chemo. 18 weeks – seemed like such a long time to put my life on hold for. I was trying to mentally calculate the client projects I’d have to juggle around this inconvenient blip. And yet here we are two years on and I’m still having chemo. My main concern now is running out of chemo options. I’ve now had eight chemo agents and one immunotherapy. Not including placebos. Each cycle is usually three weeks. That first bout was six cycles of three weeks. I’ve now lost count of the number of cycles of chemo I have had. It is the three week rhythm of my normal life. When it stops, I’ll have stopped.
I am now on my third line treatment (this is confusing terminology as its my fourth chemo combo, but they count from one when you get a secondary tumour). This is important as options reduce the more lines of treatment you have had. This is for a number of reasons:
Physically running out of chemo agents for your cancer
Strong indication of chemo resistant tumours
Clinical trial eligibility – these pharma companies like their lab rats as ‘un-messed with’ as possible
Cumulative side effects – there is only so much pummelling your body can take before your quality of life is so shit you say ‘enough, i’ll take my chance with the cancer, enjoy what time I have left.’
I have just finished cycle five of Atezolizumab and Eribulin. I don’t think it is working like it was. One more cycle and I will have done the same as that first 18 weeks of neo adjuvant chemo. Back in May 2018 it seemed like such a long time to put my life on hold for. Now it is my life. It is keeping me alive. It is holding the cancer train back. Just. I hope.
People are afraid of Covid-19 and friends and family worry about me having treatment in a Covid hospital two weeks out of every three, but the reality is my risk of dying of cancer is much higher. The maths is pretty easy. As a fellow metastatic Triple Negative Breast Cancer (mTNBC) friend of mine put it, the mortality rate for mTNBC is 100%, versus c3-4% for Covid-19 (or whatever they are quoting this week). Even without the figures, my eight year old gets the maths. She’s bright enough to know that despite me being on the extremely vulnerable list and us shielding, it is still better for me to go to the hospital and take the Covid risk. That said Covid and Cancer wouldn’t be a combo I’d relish.
I am very confused about how to feel today – my cancer-versary. I haven’t mentioned it to anyone (this post might be a giveaway). I didn’t stop crying yesterday. I went to bed at 5.45pm, which I’m sure was in anticipation of today. Earlier this week, my husband booked today off work. He said he fancied a break from work and wanted to get some jobs done in the house. I’m still in bed typing this, he’s in the homeschooling/housekeeper hot seat. I still don’t know if he has remembered or not, or if it even matters. Some people’s cancerversaries are celebrated as cancer is behind them, they are clear or have no evidence of active disease (NEAD). I’m not sure how to be on mine? I’m still in treatment. But that treatment is also keeping me alive.
Oncologists don’t like to talk about prognosis or estimated survival rates or the time you have left. It doesn’t really help and frankly they don’t know. I’m bucking the trend for average survival after secondary diagnosis, so maybe I’ll surprise everyone. On that basis today should be a celebration that I am still here. I am very much ALIVE! Despite a lot of pain, side effects and increasing disability in my right side, I do feel lucky.
Tired, emotional, but lucky. So let’s celebrate that.
This time yesterday I was doing a yoga class on Zoom and today I am desperately trying to finish a blog post in bed before the kids wake up. Why the keenness? At 9am my laptop gets seconded to ‘home school’ and I don’t see it until later in the day. Normally when I’m doing after school snacks and prepping dinner. I then have to log the kids on to their Zoom calls with their class mates! Which I think are great as the lack of peer social contact is having quite a negative effect on both my kids. Yesterday I took the opportunity to go for a walk (with my son) while my daughter was ensconced on a slightly crazy seven way Zoom call with a handful of the 8 year old girls in her year group. It was a joy to see all their happy little faces, yet I wasn’t sorry to leave the squealing behind. Earlier that day (P.S I’ve learnt yesterday that that is a fronted adverbial!!), I’d joked on a WhatsApp that Zoom was the new babysitter. However, I cringed when my husband informed me that one of our friends (another of the 8 year old’s Mum) had called him because our daughter had managed to turn her camera off or something similar and was having a meltdown on the call. I had asked him to keep an ear out for her, but I was slightly amused at this digital to human hands on work around my daughter had triggered.
Anyway I digress (as usual).
Those who follow me on Insta will know this, but for those that don’t: it is with huge relief that I can confirm that my bloods came back up the Friday before last. My neutrophils went from 0.4 to 18.8 in less than 3 days. The extreme back pain from the GCSF injections was worth it. I got my Day 1 treatment. And again by the skin of my teeth (neutrophils came in at 1.1) I got my Day 8 treatment. It was a bit odd in London that first Friday, but nothing like the Friday just gone.
That day was more than eerie. Whilst a week or so ago there were less people (the Millennium Bridge had not even a handful of people on it) and less traffic, on this latest Friday the shops and cafes were dark, chairs stacked on tables in the middle of the day, all the shutters down in Hatton Garden, some pubs and shops in the city were already boarded up, presumably to avoid vandalism, looting or squatting.
Today, I was with my brother. We spent a lot of our childhood Sunday’s driving up to London and seeing the sights from the car before parking up and going to a museum or a favourite haunt of my Dad’s The Tower Hotel Carvery (it was the late 70s/early 80s and it made a change from a Berni Inn, plus they had free parking for patrons).
One of my many memories of these Sunday jaunts was quiet roads and pavements, and closed shops. Resturants and museums being your only available open establishment. But last Friday it was deserted. We had a green light pretty much from Hammersmith to the Holborn Viaduct. We sauntered round Piccadilly Circus in my brother’s van, taking pictures as we went. A journey that had been taking 3.5hrs we did in 1hr 10mins. We arrived so early we had to wait in my brother’s van before queuing to get into the hospital. This is no hardship as he has a kettle and an enviable array of herbal teas, coffees, soups and hot chocolates. I’m loving hanging out in this van with my little bro (he looks after me like he’s older, but he’s actually my second youngest sibling). I’ve spent a lot of my life sitting next to my Dad or my brother in a van or lorry. I even learnt to drive in a little van!
My brother carried my bags to the hospital building queue, but left me there. It was 8.15am and the queue (2m apart) was already long to get inside the hospital. Once in the lobby security made sure I sanitised my hands and then I completed a Covid-19 questionnaire/checklist with a nurse who then signed the form that allowed me in the hospital. I then made my way to the place to have bloods. There were 2m tape makers to queue for the lifts, but no queue. There was only me and about 5 other people in the entire ground floor of this central London hospital. You could hear a pin drop while waiting for that lift. The lift itself was divided into 4 spaces (not strictly 2m apart, but they were trying). Today, for the first time ever, I was the only person in this lift.
Once on the chemo floor, it was busy. We had to wait to go in to the bloods and chemo waiting room. No one allowed in without having their temp. tested.
Last week this had been quite jovial. We had all had our one guest/relative with us and a chemo patient from a couple of generations above me started singing Vera Lynn Songs. We all joined in. We felt united, cancer patients, facing chemo yet again with Coronavirus just another challenge to overcome. It had an ‘in it together’ spirit that I had felt many times on a chemo ward or on a TNBC forum, but this time it had bells on – we were singing Dame Vera Lynn FFS.
A week later the wait outside the waiting room had a somewhat sombre atmosphere. People were on their own. Relatives left outside the hospital. Everyone was jostling to keep 2m apart, yet not lose their place in the queue and all the while dodging the new patients arriving gingerly from the 3 lifts. Lifts that opened straight into this unspoken, eerie, seemingly haphazard, yet strategically placed ‘queue’. It was weird. Once in reception patients chose their seats to keep as far away as possible from the people already seated. It was a bit like picking your spot on a beach that is filling fast. I even had a towel, blanket, packed lunch and a cool bag. It gets cold having your head and hair follicles frozen for 3hrs. On the advice of a friend, I also take a big bag of frozen gel packs that I wear on my feet and hands with special foot sleeves and a pair of my husband’s old socks (on my hands). Alledgedly, this will help prevent nerve damage and the chemo getting right down to your outer extremities (in your capillaries). I have had a lot of peripheral neuropathy and am still dealing with a lot of numbness and nerve damage in my right hand. I can’t feel or use my pinkie or my ring finger properly. This pain is indicative of damage to my ulnar nerve. My physio, pain relief therapist and lympodema nurses were making a big difference to this and other pains. The movement has been improving in my whole right arm, but it’s impossible to receive hands-on physio, deep trigger point or lymphatic massage over the phone or internet. So, whilst struggling to carry my cold blocks and to put them on myself, I do it because it just might make a difference to my comfort levels, use of my limbs and my quality of life.
The atmosphere in the chemo bay is one of caution, suspicion and the unknown. Almost no chit chat amongst the staff or the patients. Each one dancing between politeness and wondering if they/you are the person that will unknowingly pass Corona on to them. At home I am waiting two days to open post and touch envelopes or grocery packaging, but here I have a chemo nurse right under my chin attempting to access my port.
I can feel her breath.
This doesn’t feel like social distancing, but what bloody choice do I have? Stay at home for 12 weeks plus and let this aggressive cancer take hold again. Cancer cells growing in my pleura causing me to feel like I am drowning in my own lungs. Cancer cells blocking my blood vessels and lymphatics so my arm blows up to over 3 times the size and weight of the other. Cancer cells growing in the nodes under my arm so I can’t lift it and pushing on my nerves causing deep crackling pain. Cancer cells growing in the skin on my chest and mastectomy scars, so it is so tight it restricts movement and eventually the skin breaks and God only knows what breaks out of my chest wall and will not heal over.
No thanks, I’ll take my chance with Corona.
Obviously I don’t fancy getting it or being the one who might bring it home to my family, but given the choice between the certainty of the cancer taking over or the chance of getting Corona (even with complications) I know which I will continue to chose. I’ve spent nearly two years on treatment that has not really worked and now after 13 months of teeth gritted determination I have finally got a drug combo that seems to be working. I’m not giving up on that lightly. Not on your Nelly.
Once I have had my chemo I head out of the hospital in silence, alone, with all my bags and a heavy heart. I have had over 3hrs to think about this hand of cards I have been dealt and have tried to play as doggedly and as positively as I can for nearly two years. I am tired and overwhelmed by sadness. Sometimes, it is just too much to bare emotionally, never mind physically.
I pop out the hospital grounds and see my trusty, solid (no offence) brother in his familiar, safe van and I burst into tears. We abandon social distancing and he gives me a bear hug.
Time to get the van kettle on and sail home through the baron and still streets of London.
Chemo & Immuno on 20th and 27th March 2020 finished on the 31st March 2020
One of the many things I have learned about life and myself over the last two years is that accepting the facts, frees you to be back in the driving seat. Those of you who read my blogs regularly will say, ‘but you never give in or give up or accept a situation’. Well actually that is not true. Giving up and giving in are different from acceptance. In order to accept I need to push the boundaries – its in my DNA and my upbringing. I do not accept things on face value, I interrogate the situation to challenge and then find out the facts, the parameters, what are the restrictions that we have to work within. I accept those real facts (quickly), I then make a plan to go around them or find a different route to the same or similar outcome.
Being angry, frustrated or taking the role of the victim does not help you or anyone around you. Never has the phrase ‘we are where we are’ been truer.
Yes I am going to be beyond devastated if they cancel my treatment or travel to London or if they have no staff in the hospitals. I finally have a treatment that is working – once again Covid-19 in this situation would be plot line that lacked believability – but here we are. I will do everything in my power to get treatment on Friday and then two out of every three weeks for the foreseeable future or this cancer will get me and that really will be that.
I did not accept – ‘wait until next week for treatment to see if your bloods come back up’. I asked what my neutrophils had to be to treat me, and how we got them there in the fastest time. I asked what else we can do and if we can have treatment earlier than a week’s delay. The team appreciate (most of the time) my can do/will do attitude and my challenges to the limits. They also are very clear with me about the facts. I know when I have got to the real facts. I then accept and move on to make a new plan.
If I had had chemo yesterday I would not have been able to use the time to plan for the inevitable home schooling. If Johnson hadn’t called it yesterday we probably would have had to. In May 2018 when I was hit by the blow of an advanced cancer diagnosis I thought I’d be taking 6-9 months out my life and then back to normal. It became viserally apparent that was not going to be the case. I would be lucky to see my kids out of primary school and cancer was my new normal, here forever, treatable, but not curable. I accept this situation because I know cancer will rob me and my loved ones of so much future, I refuse to let then rob me of the now. I’m not giving it that power. And Covid-19 can do one too.
So one minute I’m worrying about seeing my kids through primary school and now I am planning to run one in my kitchen. I accepted that I was going to have to fit home schooling in around chemo/immuno and recovery earlier this week. It was inevitable. Yes, like the rest of the nation we could all do without this. Our lives have been turned upside down.
Perversely, I’m looking forward to it. When Corona-19 hit I thought – well at least I don’t have to worry about catching a common cold and ending up in an ambulance in the middle of the night. Finally the nation is washing its hands. My chances of being febrile neutropenic are smaller and neutropenic sepsis more unlikely too. That said Covid-19 would give my body and its defences a run for its money so I’m not licking the tube yet. Especially now I’m neutropenic.
I think the other reason I feel strangely calm (aside from the fact that I haven’t yet had to home school and spend 24hrs straight with my kids (and my husband) indefinitely), is I feel like the rest of the nation have stepped into the same crazy, uncertain world I’ve been navigating for two years and its great to have the company.
Come on in – it ain’t so bad.
It’s also great to have some intellectual purpose for my days – even if at 47 I am going to have to finally learn my times tables and how to spell. However, cursive handwriting might be a push too far (sorry Mum – it will continue to disappoint and annoy you).
So I say don’t give up and say you’ll be crap at home schooling, at cooking like you are on an episode of ‘Ready Steady Cook’, at giving your kids what they need.
Accept that this is happening.
The surreal just got real.
Take a breath, get on board, learn something about your kids and yourself, get the wider family involved and have some fun. This really is an opportunity of a lifetime. A challenge we never thought we’d have to deal with, but we are. A carved out space to create memories you would never have had the energy, time or commitment to do.
Oh, and accept that sometimes you are going to F**k up too.
I know I’ve been radio silent. I know you have been thinking about me and I know by the volume of texts and message I have received in the last week that Covid-19 has triggered the rise of my name up the list of people to think about.
Thank you for thinking of me. I’m OK.
Actually I am not just OK. I am pretty damn good. I could have written this a couple of weeks ago, but despite my strong belief in my intuition I was still too superstitious to announce that my cancer is shrinking. I think I need to write that in capitals.
‘MY CANCER IS SHRINKING’
I knew this by the feel of my armpit, the colour, shape and feel of my mastectomy scar and chest. They way I felt, my shrinking arm, my ability to breath and move. I knew it in my heart, but whilst I couldn’t keep my opinion from close friends and family I didn’t feel I could commit the news to writing without the confirmation of a scan (even though these are notoriously unreliable).
Today my oncologist confirmed that I am having what is called a partial response (PR) to treatment. When you have been fighting advanced cancer for nearly two years this good news does not seem real. The tumours have not gone altogether, the pleural fluid was malignant and the cancer is still lurking and lying low in my body.
Waiting to pounce.
My treatment is to extend my life expectancy, not curative. But God damn it (too many Netflix boxsets, I never say that!!) now I have it in writing, that it is actually shrinking.
And that my friends (or should I say you’ll) is something to celebrate.
However, we know it is a roller coaster and the good bits are pretty rapidly followed by a setback or frustration. This wouldn’t be my journey if it was straight forward.
18th March 2020
I wrote the beginning of this post yesterday morning when I had seen my oncologist and checked in to the NHS on-site hostel (more later!). I’d got through the security and the temp checks on the doors of the hospital. I’d navigating (at very wide berth) the person having a row with security on why they were not a Covid-19 test centre. I’d passed the staff having their ‘donning and doffing’ training for their Covid-19 suits. I had my bloods done, lovely Jim (name changed to protect his blushes) got my port first time, I went straight in to the oncologist, the news was good, they were still treating patients: all there was to do was hang out on my own and do some work and read my book all in the knowledge that my treatment was working for the first time and my tumours were actually diminishing below my fingers. I was happy and chilled despite the eerily quiet waiting rooms and the impeding doom of Covid-19. I was isolated in my own little bubble in the NHS hostel. That even looked ok once I’d put the sheets on my bed and covered the mattress cover!
Then my phone rang and the trial’s nurse informed me that my bloods weren’t good enough to go ahead with treatment tomorrow and it would be delayed a week. The treatment that was properly working for the first time in 2 years. I was now frustatingly stranded in central London with no treatment the next day. I was confirmed neutropenic (no fighter white blood cells). A situation no one wants to be in, especially on chemo & immuno and especially in the midst of a global pandemic. I was gutted and a little bit scared.
As I was about 10 yards from my oncologists office I suggested that I popped over. There had to be some advantages to being on site. I was poised for action and I needed to see the people who could help, face to face (from 5ft). Together we had a chat about options. I did not want to delay a week. What if they close the chemo ward? What if the cancer sees its window of opportunity and runs rife? What if I get Covid-19 and they won’t give me treatment or worse throw me off the trial?
Despite the racing questions, trial protocol and frankly common sense told me we couldn’t do treatment as scheduled. I didn’t want to wait a week. The oncologist prescribed me some GCSF injections. They super charge your bone marrow into making more white blood cells and give you mental bone aches. Oh goodie.
The upside is I have persuaded them to let me try for treatment again on Friday and of course I hope to go from 0.4 neutrophils to something so super charged Covid doesn’t even darken my door.
The truth is I’m not worried about having Covid-19, but I’m not rushing to a ‘Covid Party’ either. My big concern is that they stop giving treatment, if they need the wards or staffing becomes so low that hospital can’t function. School closures are imminent. I’m sorting out lots of stuff for home schooling, but I now have to juggle getting to the hospital and back and childcare. The worry at my hospital is if the schools close the healthcare staff won’t be able to work. This is a systemic challenge of gigantic proportions, we have no idea how this will impact on our society in the long and short term. There will be many unintended consequences, good and bad.
I have given up on a normal future. And a normal now. I have had to stop most of my work as my appointment schedule is so intense. I have faced squarely into the depths of my own mortality. I have accepted the reality of an early death. Now the rest of the nation is being asked to challenge what their day to day life looks like for the foreseeable future.
The plus side to all of this (toilet roll hoarding aside) is we should spend more time with our immediate family, in our homes, just being. Creating experiences for our children that will shape them forever. My hope is that co-operation, creativity, collaboration and kindness will prevail. We will consume less and pare down our lives a bit.
I have certainly had a simpler life (parking the advanced cancer dramas) for the last two years. I booked our first family holiday on a plane a few weeks ago. The kids were delighted, it was iconic to them. If we can fly and leave the country, Mummy must be getting better. We cancelled it two days after booking – still at least my kids aren’t blaming me anymore!
Tech is failing me for photo uploads today and my proof reading head is not on, but if I put off posting another day it will be another week.
I want to write a long post about this and maybe later I will or maybe this will turn into one. After all it took a bloody long time to get here. Twenty-one months of fighting cancer and 13 months fighting the medical system for the one immunotherapy drug in trial that ‘may’ have some hope for metastatic triple negative breast cancer.
Breast cancer is still one of the leading causes of death in women (despite it being and I quote an acquaintance ‘one of the best cancers to get’!!!) and despite many more people surviving breast cancer, there are still too many lives taken. Just this week another young mum in my support forum was taken too soon. Leaving 3 young children (below 5) and a husband in the wake and destruction of TNBC. A disease with no cure or targeted therapy to control it.
Due to this lack of treatment, finding a cure or even a treatment to control spread could be big bucks for big pharma. Only 15% of breast cancers are triple negative, but it’s still a decent segment for big pharma to make money from. As a result of this there are lots of different clinical trials for triple negative patients. On the surface this is good, but the reality is finding them, working out how to get on them and passing the eligibility criteria are complex tasks even for the most tenacious and energetic terminal cancer patients. Almost an oxymoron in itself. It’s a wonder anyone meets the trial equivalent of an algorithm. All this searching and hoop jumping just to be a lab rat for future triple negative patients and possibly buy yourself a few more months in the process.
The first trial I found was perfect and gave me immunotherapy as a given as it was the combo they were trialing. Partnerships were with old chemos or additional triple negative targeted therapies. Everyone got immunotherapy, Atezolizumab. An attempt to find Atezo’s killer combo (or survivor’s combo). Unfortunately this immunotherapy trial wasn’t available to me as my reoccurrence/secondary cancer had been discovered in less than 12 months after my primary diagnosis. In short my proactive nature which had insisted on the scan that found the tumour was 4 months too early to be eligible.
Other trials I found I wasn’t eligible for because my tumour wasn’t big enough yet! Frustrating doesn’t even cover it. Eventually I found a trial that I was eligible for by 1mm of tumour measurement. This trial involved months of travelling to the research hospital only to get disease progression and find out I was on the placebo.
The second clinical trial was another mission to get on. Loyal followers of this blog will remember that. This trial yielded another 4hr round journey to get the standard or care drug I could have got on my doorstep. A journey worth it for the chance of getting Atezolizumab. A money can’t buy drug. Those of you playing attention know that that time I was rewarded with the control. Atezolizumab missed again. I was the last person to get on this trial globally. There was a part 2 to this drug and if I met certain eligibility criteria the second part could be open to me. It was beginning to sound like the bonus schemes most of the consultancies I’ve worked for offered. Unlike those, stage 2 finally paid out. All the hard work, hoop jumping and waiting had delivered.
Today I am proud and frankly astounded to report that I have Atezolizumab running through my veins. Hopefully playing with it’s wingman chemo Eribulin to finally have some impact on this aggressive and relentless cancer. Let’s hope it buys me some more time and doesn’t make my quality of life too grim with the toxicity.
Who thought I’d be celebrating getting my 8th chemo agent and an off label drug. Funny where life takes you.
Bit like this journey, the post didn’t end up being short either. However, did beat Brexit to a different post.
This is a post I have started and not finished many times. Either events have over taken the post or I can’t bear to transport myself back to the first dalliance with barbaric chemo.But on the cusp of making a decision about new treatment which will likely see me lose my hair again I feel I must revisit it and commit to paper.
I’m not going to write about all the side effects, suffice to say there were many and some still keep coming from that early treatment. It’s also impossible to unravel what was chemo related and what was menopause related. I went from not even being peri-menopausal to post menopausal overnight.
It was like throwing yourself of an oestrogen cliff.
Bone pain, mood swings, night sweats, hot flushes and all sorts of other intimate issues were thrown in the mix with cancer and its treatment. However, the mouth ulcers, bowel issues, blurred vision, chemo brain, neuropathy, hand and foot syndrome and nausea were all less psychologically complex than the hair loss.
Nothing shouts cancer across a busy playground than a bald head. It is the icon of cancer patients. It incites pity, cocked heads, patronising conversations, hackneyed platitudes like no other.
Yet being bald wasn’t actually that bad.
Going bald was a whole new ball game. All the publicity about ‘braving the shave’ for me glosses over the loss.
The cold cap
Rightly or wrongly I decided to try and keep my hair. I endured the cold cap on my first ever chemo back in June 2018. This in itself is an experience! You hair is sprayed all over with cold water, then imagine putting your head in thick rubber swimming hat filled with tubes like the pipes in the inside of your freezer. This is then secured in with a neoprene skull cap and attached to a generator and a water pump. The cap fills with freezing cold water which is then turned to ice on your head. The weight and constriction are intense and that’s before you add in the cold. Wowzers!
As my daughter said ‘Mummy, was it like a really bad ice cream headache?’ – ‘kind of’ I managed to reply!
The wonderful nurses at my original hospital managed expectation brilliantly. They said when you think you can’t handle it any more, take a deep breath and wait another 10mins and it will be ok. I did this and it was. Because my head was so numb I stopped feeling anything except the weight of the cap. You have to have it on an hour before and an hour after so I had it on for about 4hrs. Apparently it freezes your hair follicles and stops the chemo getting to you.
Like most series of chemo I had six three weekly cycles. i started with FEC-T. A cocktail of 4 drugs delivered individually via i/v, interspersed with the steroids, flushes and Piriton. So I only had to endure the cold cap another 5 times. I thought I’d give it a go.
Except my hair started falling out 10 days after my first cycle so it seemed a bit pointless. So a few weeks after I discovered I had cancer I had to deal with the very real reality that I was going to lose my hair. I had yet to tell all my friends and colleagues I had cancer, I hadn’t absorbed it myself. I was still fulfilling work commitments and had not told clients.
A few days later I had to deliver a lecture on Innovation and a facilitated workshop at the London Business School. My friends and family thought I was mad, but I’d worked on winning this piece of work for almost a year and I’d done the prep so I only had to stand up, smile and deliver. This seemed easier than uttering the words ‘I’ve just found out I have advanced breast cancer and I’m on chemotherapy’.
I’d been on chemo for 3 weeks and my blood counts were at their lowest. I was seriously immune compromised. I decided that the train and tube wasn’t going to cut it. It was bad enough being in a room with 80 people. I either cancelled (which I’ve never done) or got a taxi and got on with it.
So the morning I had this lot in my hand I got in a cab and delivered. I had to make a last minute jacket change as the navy one exasperated the hair which was literally falling out as I moved. The session went well and I loved it. They thought I was a right diva when I left and jumped in my private car to take me home. If only they knew!
The week before the LBS gig, I panicked that all my hair was going to be gone in days (based on the rate It was falling out and the amount I found on my pillow, in the plug hole and on the floor).
I needed to get a back up plan, I wasn’t ready to stand up bald in a room of 80 people. I needed to source a wig. And fast. This is not as easy as it sounds. In the NHS you need a referral, then an appointment and then they ordered something in. After a bit of phoning around I found a wonderful women about 45 mins away from me. She had no appointments, but put me on the cancellation list. She also asked me to send some photos of my hair via email. Within minutes of sending the email she called back and said she was pretty sure she had a wig in stock that would suit. Originally she’d talked about ordering 4/5 in and then me trying them and deciding. I was comfortable with this. However, she sounded very sure about the wig in stock. Sometimes you have to trust someone who specialises in something. I rang a good friend who I knew would be up for and not freaked out by the trip and would give an honest opinion.
Off we went and had an absolute ball!
It was honestly one of the most unexpectedly fun outings Cancer has gifted me. The wig was so perfect it was weird. It was my hair, but on a good day. The woman styled it and showed my how to brush it, wash and condition (I kid you not) and dry it. All things I had no clue about. Suddenly staying in to wash my hair would be a reality!
My wig was expensive, yet another hidden cost of cancer, but it was worth every penny. I didn’t need to wear it to the LBS, but the day I bought it I wore it for school pick up. It was a tight fit as I still had quite a lot of hair despite what had fallen out. Two mums were in on it, but apart from that no one knew. 95% of the playground didn’t know I had cancer. I got several breezy ‘nice hair cut’ ‘you look well’ comments and one Mum who has the same hairdresser said she loved the cut and had sarah done it? She touched it and said how well it sat at the back. I felt sick inside, dreading it coming off as she touched it, cringing as I lied about my cut! We laugh about this day now. The best thing about it was both my son and my daughter didn’t even notice. When I took it off a home they were gob smacked, but also my daughter was relieved as she was most worried about a ‘bald mummy’ picking her up from school. The thought of the hair loss bothered her a lot, she still goes on about it now.
I am now on the cusp of having yet another change of treatment as my disease has progressed again. Finally the scans and oncologists opinions agree with my own experience of the growing tumours in my axilla and the ever growing skin and chest wall metastasis that I have to look at in the mirror and deal with the chronic pain of. Despite what is in plain sight they don’t show up on an ultra sound or CT scan. Finally I’ve been referred to stage 2 of the trial and am hoping I’ll pass eligibility and they’ll give me immunotherapy. I’ve been campaigning for it for over 12 months and have had the placebo/control in the last 2 trials so this has to be 3rd time lucky. Surely.
The thing is immunotherapy might not even work but the good thing (I think) is I get it with another chemo agent called Eribulin. This will be my 8th chemo agent and my fourth series of chemo treatment. I remember when they first told me I had cancer and I’d have 18 weeks of chemo, nowadays I get worried when I’m not on it or it options are limited, which they are.
This chemo is likely to cause complete hair loss again. I’ve had hair thinning with the last two, but not complete loss. Yes I have a great wig, but I’m still not relishing the thought of the cold cap or losing all my hair again. That’s why I thought I’d finish this post.
People who ‘brave the shave’ for charity do not go through the almost mourning period of losing every hair on their body. They get the end result not the tough journey to get there. It’s not just the hair on your head either. I never knew how much I liked and needed my eyebrows and lashes. Aside from the fact that they frame your face and eyes, they also stop sweat running in your eyes or flies sticking on you eyeballs. The hair up my nose also stops pollen going right up it and warms and filters the air we breath in. This combined with no mucus makes your nasal passages very uncomfortable. Never take body hair or lubrications for granted!
Braving the Shave
Eventually at the end of August 2018 I could not deal with the patchy hair anymore. I have worn a hat or head scarf for most of the summer (wig was just too hot for the summer of 2018) with little bits of hair coming out the bottom. So it looked like I had hair. The bald patch in the middle was hidden from view. It was however always waiting for me when I got home, when I cleaned my teeth before bed and again in the morning. Time to take charge, the hair had to go. My husband shaved it off and it was massively liberating. Should have done it earlier. I still wore my wig for most of Autumn.
Wig, bald, scarves & regrowth
Look good, feel better
In the middle of Autumn I did a course with a small, but important charity called ‘Look good feel better’, they give you a bag of cosmetics and a 2-3hr session on painting on eyebrows, putting some colour in your cheeks and a bit of a spring in your step. It was fab. The BBC happened to be filming the day I had my session and most participants weren’t keen to be on film. I said yes as I thought the charity was good and it might help funding. Plus once you’ve had a boob off and half the county gawping at and touching your chest, you get a bit blasé about these things. A few others said yes too and they made the film below that was on the BBC news. In fact it got slightly more coverage than I had anticipated. I was unlucky enough to be the mug shot on the front of the clip, double chin and all. As I have since discovered that it is all over twitter and all the staff at my local hospital had it on their newsletter so I thought i’d include it here too.
Yesterday I finally got my CT results from 3 weeks ago. They are stable. But what does that actually mean? I don’t know how to feel about that word. It doesn’t excite or sadden me. It’s neutral. I feel like I’m in a holding circle outside Heathrow, not able to land or fly off.
‘Stable’ definitely doesn’t ooze positivity. A political situation in a far off land that becomes ‘stable’ doesn’t have you rushing to book your next holiday there. Stable pension funds or economies are safer, but not a cause for celebration or a spend up. Riding a bike with stabilisers is an interim phase between falling off and riding properly.
I guess I’d rather not be falling off.
Pretty much every appointment I’ve had in the last 20 months has been bad news or unfolding bad news or seemingly positive news that belied my clinical representation or turned out to be bad news due to a scanning error.
Let’s just say I brace myself for bad news. I prepare for it, I seek to interrogate and understand it. I then accept it and move on to forming or executing the next plan of attack. I’m a problem solver by nature and profession. I’m an action junkie. I don’t know how to be around stable? I’m not organising a party and I’m not researching alternatives or mobilising the NHS. It feels indifferent and passive and I don’t like it!
My RECIST (response evaluation criteria in solid tumours) report shows a 1mm reduction in the size of my target lesion (the largest lymph node in my contralateral axilla). On 12th Sept scan it measured 19mm and on 19th Nov it measures 18mm. It’s going in the right direction, not enough for partial response (PR) to be classified, but not enough for progressive disease (PD) either. But here is the rub. That same 12 Sept scan was originally measured and reported by my previous hospital and the lymph node in question was reported as 16mm.
Same raw data, different reporter.
So based on the original report I have a 2mm growth. In addition the same node was reported twice in the summer as being complete response to treatment (CR) and it measured 0mm! Yet I could still feel it and it felt like it was growing (and it was). See why I don’t trust scans!
Now let’s go back to clinical evidence – or in lay terms – eyes and fingers. The lymph node in question feels smaller than it was when I started this second trial (that’s good right?), but it also feels like it has coalesced with the other enlarged lymph nodes to form a skinnier (technical term) yet longer mass. So what are they actually measuring?
On top of all of this my skin metastasises are growing. I have 3 reasonably significant ones and two tiny ones that I expect no one will acknowledge, but I know they feel exactly how the others did at the start. The biggest skin met has been biopsied and is definitely triple negative breast cancer cells. And yet I had a private ultrasound of my chest wall last week and the monographer said ‘there is nothing there’! I had to stop the sonographer and say I presume you mean on the scan as you can plainly see and feel them on my chest! Of course that’s what she meant, but it made me feel like I was making it up! Even my 7 year old says ‘Mummy is that another cancer lump?’ And ‘that one is getting bigger isn’t it Mummy?’ How do I deal with ‘stable’ in this context? Even my daughter wants to know when I will switch to a treatment that actually works!
She doesn’t get ‘stable’ either.
A loved one in intensive care who is reported as stable doesn’t fill you with joy. You take a breath, you might be relieved, but you aren’t out of the woods. I guess a terminal cancer patient is never ‘out of the woods’, so maybe ‘stable’ is as good as it gets. I’m restless, I’m impatient, I get it.
In my case ‘stable’ is pretty hopeful. Dying’s on hold for a bit longer. Christmas can be ‘stable’ not disrupted by new treatment or adverse reactions.
It’s still too passive for me. But I think that’s my nature. I perhaps need to turn off my ‘high alert’ button and give my para sympathetic system a rest over Christmas. Changing treatment over the festive period is never ideal (I did that last Christmas), so perhaps I need to take that very deep breath and try and ignore my sixth sense for another cycle of this wretched chemo.
I’ve been a little quiet in the last few weeks. There’s been a lot going on in and outside my head. I’ve not known where to start and didn’t want to be trite.
It’s not appropriate to discuss it in detail here, but we have been having a long term battle with systems that support our children to understand themselves, be understood and reach their potential. This has been a focus long before my cancer diagnosis, but it just got a whole lot more urgent due to me feeling like time was running out to fight their corner. Let’s just say it was on my bucket list to get done.
One day I hope my kids will see that using my energy and our money for their diagnoses will have more longevity and impact than a trip to Disney. I am determined that they are aware of their emotional and practical needs, how to ask for help and support to create and take opportunities in life.
My mum was always there for me (and still is), she put me before herself or others on so many occasions. Sometimes this was intense and difficult for me and other people in our life, but above all I have had the privilege and knowledge that I am loved immensely and unconditionally. I want my children to know that too. Like my mum I want to help them in practical ways, but also to help them know themselves and be proud of who they are. I hope they have already felt that, and will remember it fondly with gratitude. I might not be there, so I want all the people around them to do their best to nurture and support them to be strong individuals.
Actually they already are strong individuals, but I want my diagnosis to make them both aware of their vulnerabilities and the power of resilience. I continue to believe that my attitude to cancer’s challenges will hopefully give them values and lessons that will endure long after I’m gone. I’ve also always believed that it takes a whole village to bring up a child and we need this now more than ever.
It’s one of the many reasons I am open about my journey. My broad and varied support team are as invaluable to us now as I hope they will be if and when I’m gone.
This post is taking a surprisingly sentimental direction.
I’m anxious about my CT results.
I’m waiting in clinic to see an oncologist. The path forward is a bit hazy at the moment. I don’t mind tough terrain, I just want to know the plan. I’m hoping with equal parts that the current chemo is not working and is working. If the latter, I stay on my current regime. The former continues the fight for immunotherapy or any treatment that slows the spread.
I’ve waited 3 weeks for these results and it’s been two months since my last scan results. A lot can change in that time.
Where am I now?
I’m now on the last day of Cycle 3 of Capecitabine. I’ve been on the oral tablets 14 days on and 7 off for 9 weeks. With multiple anti-sickness tabs and a strong routine around food, I’ve managed to keep them down. The other side effects are pretty grim. The skin on my hands and feet is red raw and swollen, peeling in places and inflamed.
My fine motor skills are being challenged as my finger prints are smoothed out and the fingertips are bolbus. This is further exasperated by lymphoedema on my right arm and a suspected DVT. My iPhone doesn’t recognise my fingers and even hitting the right keys and letters is a challenge. My feet are sore after walking or standing for too long and they are burning hot.
I’m not letting any of this stop me walking or typing, but it makes it more tiring. I’m annoyed with my failing body. In fact what I am annoyed with is the chemo is effecting me adversely, yet it doesn’t appear to be working.
I wrote in a previous poem that I’m happy to poison myself in the now to see more future. With each chemo that fails this journey seems more futile and the path ahead less clear.
There is no doubt that mentally it’s tougher to physically swallow chemotherapy. Not least when you were hoping to avoid it and try immunotherapy.
The last 3 weeks have been a blur. I’m hoping I’m through the worst. This post has been written a bit intermittently.
Most of you know by now that I was on the placebo in the last clinical trial. After a bit of a scramble, I was lucky enough to get on another clinical trial. The last place globally, with a chance of getting Atezolizumab.
Unfortunately I got the control, so as you know I’m not on immunotherapy I’m on chemo again. I’m so over chemo.
Passage produced the first weekend of the new chemo, Capecitabine:
I am now dictating this in the dark with my sunglasses on because I’ve been in bed since Saturday night, it’s now Monday morning and I have been pretty sick since Sat. This is my seventh type of chemo drug and my third block of chemo cycles. Naïvely I thought that this oral chemo would be convenient and fit around my life.
Oh how I was wrong.
I feel more unwell than when on any of the other chemos. When you sit and think about it, or lie in my case, the chemo pills are going down my throat and into my stomach and through my intestines, which is a lot of surface area for a cytotoxic drug to be in contact with. I can only assume that this is why I feel so ill.
It may also be the dosage which they may alter, but for now I am still trying to swallow 10 bitter chemo pills a day. I can just about handle swallowing them, but once they have melted or partially melted in my stomach, bringing them back up again is one of the most unpleasant things I have had to endure.
I cannot really put into words the feeling of that acidic liquid burning my throat on the way out.
I really thought the first lot of chemo I had back in June 2018 was the worst (which is why I have yet to write about it properly), but this seems to have really knocked me for six.
As truly revolting as the vomiting is, the headache which feels like my head is permanently in a vice and the photo sensitivity are debilitating. I’ve been lying in a dark room since Saturday night. Unable to read, watch TV or talk too much.
I am unsure whether my body‘s reaction to this is just a chemical one or if I am psychologically rejecting the control; the injustice and all-round bad luck in missing out on Atezolizumab again.
Dictated notes from the first lot of Capecitabine.
I am determined to blaze through this drug in the hope that it is doing to the cancer what it is doing to me. The week before last I ended up back in the hospital in London because the vomiting wouldn’t stop. After some monitoring and a lot of hanging around, I was sent home with additional anti-sickness drugs (or ‘Auntie Soonest’ as my dictation wrote the first time. I quite like that, she sounds like just the kind of person I need right now!).
After the first lot of sickness I was given 48 hour respite from the chemo to then begin again.
Once I started up the chemo tablets again it didn’t seem quite as bad; then three days later it started. I had the headache, I was dizzy I couldn’t really talk I couldn’t read or watch TV. Once again I am dictating this into my phone in the dark.
Chemo is a bit like childbirth. No one really tells you what is is actually like and everyone’s experience is different anyway. Universally it’s pretty horrendous going through it, but the potential reward is worth it. Moreover the end result seems to wipe your memory of the enormity of the process of getting there. However, unlike the birth of both my children I was not rewarded at the end of the last two gruelling journeys. That has certainly been my experience thus far. All that pain and horror for nothing.
Actually not nothing: disease progression.
I am left wondering if this particular chemo is so bad because unlike the others it’s really doing the job. That is all I can grip onto as I endeavour to endure another day.
Cancer is truly an evil bastard. Its treatment is something else. It is impossible to fathom the paradox of feeling relatively well when you are off treatment, with tumours growing everywhere, versus being on treatment and being debilitated.
Mummy I preferred it when you just had cancer, you were ok then, I think the chemotherapy is making you ill, can we go back to you just having cancer?
As my daughter said, right back at the beginning of the first lot of chemo. She was six then.
That’s how I feel right now. This is why people stop treatment. At the moment I am wobbling my way along a tightrope between tolerable drug toxicity and drug efficacy.
My daughter is seven now. She has an amazing ability to cut through the crap and describe the heart of the situation. For example, when we finished chemotherapy the first time I went on to have three operations, each one hoping to get a clear margin around the cancer. Each one failing in its mission. As I got the last pathology report back in early December 2018, I was truly devastated to discover that there were still cancer cells in the margins. Teeny tiny bits of cancer in my blood and lymph vessels. I knew these where tributaries of two crucial fluid systems that move stuff around my body. This did not sound like a good place for cancer cells to hang out, however ‘microscopic’ they were. My surgeon told me I would probably have to have adjuvant chemo (after surgery) as well as the 18 weeks of neo adjuvant I had endured before surgery.
This was the first moment I lost it in front of a consultant. My head crashed down on the other side of his enormous oak desk.
“F**k!“ I screamed.
When we tried to explain this to the children, my daughter’s reaction was:
So mummy instead of being nearly at the end, we are actually right back at the beginning.
She nailed it then too.
It seems that killing cancer has to happen in a way that makes it feel like it’s killing you first. Chemotherapy is what you call a systemic treatment. It is undiscriminating, attacking my whole body because the harsh reality is nobody knows where those microscopic cancer cells are hiding now.
So long story short, the same thing happened when I restarted the Cape (as it is known to its friends(!!)).This time I decided not to go to A&E. I took my pulse, temp and BP at home and they were all OK (that’s the first 2-3hrs of being in A&E covered). I didn’t have an infection. I was massively dehydrated and exhausted from vomiting. We phoned the hospital hotline again and said we were stopping the drugs in order to get some fluids back into me. We did and within a few hours I was improving. Once well enough (ish!) to travel to hospital, the oncologist came to the same conclusion as me. It was the tablets and nothing more sinister.
Whilst my reaction was a bit adverse it wasn’t unheard of.
I checked the dosing levels for my body surface area (my husband worked that calculation out) and we felt I was on a pretty high dose. Tipping into the criteria for 10 tablets by a fraction. Chemo sounds like a very precise treatment, but the truth is the dosing levels are quite a blunt tool. It’s unbelievably a bit of trial and error. Thing is, it’s me that is being experimented on. I have had to have my dose reduced on every other chemo drug due to toxicity and adverse reactions, so I guess this is where we are headed.
So after some good peer to peer discussion the oncologist and I agreed that I would give it another go at 80% of the original dose. So only 8 tablets a day now. I’d also have a break until the beginning of the next new cycle to let my body recover. This has given me a week or so to get back to myself, which aside from the cumulative cancer side effects I am now. Hence I thought I’d better get you lovely lot up to speed.
I want to give this chemo a good go because as I have said before the list of possible options for TNBC is very short. I’d be a fool to write one off at the first (few) hurdle(s).
New dose, new attitude, new drug administration regime with three lots of anti sickness tablets.
Chemotherapy is barbaric. It is counter intuitive to everything we know and expect from medicine. It makes you feel poorly before it can make you feel better. Often it doesn’t make you better. It just slowly eats away at your insides and messes with your head until your bodily functions and processes are effected. Then, in theory it starts to impact on your cancer’s ability to grow.
That’s if you’re lucky, with Triple Negative this is often a short lived effect. Sometimes it doesn’t work and the cancer just grows. After 18 weeks of four types of intravenous chemo last summer, mine grew. The main tumour was bigger than 96mm when it was removed. The last lot of 18 weeks chemo I had in spring/summer this year worked at first. My RECIST (Response Evaluation Criteria In Solid Tumors) was even described as ‘0mm, a complete response to treatment’. That was for about a month, until I felt it growing again. It was another couple of months before this showed up on a scan. My secondary tumour is now bigger than it was when I started the last clinical trial and it’s in other lymph nodes too, plus a local reoccurrence on my chest wall. You can probably tell I don’t believe chemo is that effective.
You have to be dying, to want it. Enough said.
Added to this I was always way too much of a control freak and sensible scare-dy cat to take drugs (aside from a few puffs on a spliff at Uni). Having worked for 25 years in marketing, advertising, branding and innovation consulting that’s quite an achievement and a very deliberate choice. So, it’s depressing to poison your body again and again. It is beyond comprehensibilty that the cancer continues to defy the chemo’s aggressive purpose.
It’s fair to say I’ve had a few interesting reactions to drugs in the past (pre cancer) and I’m even allergic to Red Bull. It gave me altered reality and makes me hallucinate. Even without Vodka.
So as you can imagine I’m not relishing starting my daily chemo.
I put on my big girl pants (I think I will need them!) and I tucked into my seventh type of chemo drug last night.
Two years ago I was ignorant about chemo. Chemo was chemo. It was a scary abstract concept that I’d seen depicted in films. It made you lose all your hair, vomit, your skin turned grey and it hollowed out your eyes. It looked grim. It wasn’t on my to do list. It definitely happened to other people. Not people I knew and not me.
And here we are. I am no chemo expert by any stretch and having looked into the ingredients and how they discovered some of them, you don’t always want to know. I’ve mentioned the mustard gas derived Cyclophosphamide before. That really messed with my eyes when it was surging my veins and my eyesight deteriorated. Others are platinum based, taxanes are derived from genus taxus which are yew trees, a tree we played under as children and were told in not uncertain terms not to touch the sticky yew berries (or glue berries as we called them). These are not ingredients you are salivating over putting in your body. That’s why for me intravenous is better. It’s a good way to detach.
This time around I’m on oral chemo. Who knew there was such a thing? It’s a tablet. Ten to be precise. Five in the morning and five at night. So ten times a day I am expected to knowingly swallow cytotoxic chemicals. So cytoxic (not that I think anything can be a little bit cytoxic) that I have to wear gloves to pop them out into a little sauce pot and then take them. I have to return the empty shells of the packet to the hospital, presumably to incinerate (or maybe because it’s a trial). Hopefully I won’t be an empty shell too, I’m not ready to be incinerated yet.
I thought tablets would be easier, more convenient. I’m only 10 tablets in and psychologically it’s a bit more invasive.
Give it a week and it will be my new normal. Or I’ll be distracted by the side effects.